I’ve been reminded recently — for several reasons and by many folks — of the unfamiliarity of extraintestinal manifestations (EIM or EIMs) in Crohn’s disease. Since I’m becoming a patient-expert on EIMs (through personal experience), I thought I’d share a bit more about what I know now.

Whac-a-mole cat (via Reddit)

EIMs occur in at least 25% of all patients dealing with Crohn’s and have been the primary focus of my care for going on 5 years now. My intestinal issues (knock on wood) have been mostly in remission. My EIMs though have been what my brother and husband call a game of whac-a-mole — just as one issue subsides (my knees), a new one seems to pop-up (my neck).

What’s been most helpful throughout the progression of this particular part of my disease course? Communication between my rheumatologist, my gastroenterologist, my dermatologist, my trainer, my perinatologist (when appropriate), my acupuncturist, and of course, me! Particularly with my knee-related inflammatory arthritis, I’ve found that low-impact exercise (biking, swimming, surfing, elliptical, and TRX), high-rep with low-weight exercises, and stretching are key for me.

“A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illnesses.” —Hippocrates

I am not one to often quote ancient Greek physicians, even after 4 years of Latin that I’ve entirely forgotten, but Hippocrates had a point. And perhaps this is why canes make people sad (see part one’s “minor generalizations” for details). Maybe it reminds them that all is not what it seems and to never take even the most insignificant things (like walking) for granted. Jeez, I know I don’t!

My physical cane is a minor part of the everyday reality of dealing with some pretty nasty stuff. It sits in a corner of the bedroom, and comes into plain view rarely, not unlike my proverbial cane. It’s the stuff no one sees, really ever, until things have gotten downright awful. But honestly, on average, it isn’t so bad — and who doesn’t deal with difficult things on a day-to-day basis? I like to consider Edvard Munch, whom you know him as The Scream artist, but I think of as the Norwegian guy who knew a whole lot about being sick and once said, “Without fear and illness, my life would have been a boat without a rudder.”

This week, in honor of one of my projects and with the help of an extraordinaryteam, we were able to put 45 more people into the bone marrow registry (34 in person and 11 more by mail). In light of all that is happening in the world, this seems Lilliputian. A literal drop in the bucket. But it makes me so happy to know that if someone like me — or someone entirely unlike me — needs a marrow or stem cell transplant, they now have 45 more chances to find a match. And with my fiancé’s and brother John & Jeff’s birthday presents of registering for the bone marrow registry, that makes 48. And how cool is that?

That feels way more like a rudder and less like a cane, but then again I’ve always been more comfortable with Piscean analogies.

Not too long ago I had a benign tumor, or as my surgeon later called it — a mass of “angry tissue,” removed from right knee. Six months and several knee drains later (ouch!) I’m still in physical therapy and still icing it nightly. To boot, there’s now a debate over whether this is certain to be a part of my everyday life — see PVNS for more details — as it appears some of the mass has already grown back.

I was originally on crutches post-surgery, later a cane, and eventually walking on my own. But with systemic flares, from both Crohn’s and Wegener’s, my knee uses those advantageous moments to swell up and promptly remind me of my favorite French word, pamplemousse. This intermittently requires the use of a cane and prompts the saddest and most somber looks you’ve ever seen from complete strangers. Hence I have learned the following: (prepare yourself for some minor generalizations)

+ One = Crutches are a welcome invitation for discussion. E.g. “What did you do?!” or “Were you skateboarding/surfing?” or “When I had my _CL repaired I was out for __ months…”

+ Two = If you are young, requiring the use of a cane (outside of Halloween) will make people sad and quiet. No discussions are prompted by said use of a cane, even if it is cool and purple like mine, only wide-eyed looks of despondence are the typical comeuppances.

To be honest, it has been a(n) hilarious observance of humanity and I’ve begun to treat it as an anthropological experiment. I can sense that people want to ask me, “Hey, why the cane?” but no one says a word. Personally, the most intriguing part of the whole cane experience would be that this is the very least of my health woes and yet it is the most available and apparent.

You can likely sense where I’m going with this, but I’ll leaving you hanging for the moment. Time to go see if the surf is entirely back to normal after our tsunami scare. To be continued…